RARE Meetups™

Connect. Share. Support.
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Finding out that you or a loved one has rare disease can be difficult. But you are not alone. In fact, sharing experiences with other patients and families affected by rare disease can help decrease isolation and provide valuable information and support.

Meet other families affected by specific rare diseases to discuss the challenges of living with rare disease and new strategies for managing the disease and gain valuable information and support including:

  • Disease and treatment
  • The effect of isolation on patients and families
  • Challenges of being an adult patient versus a family with a sick child
  • Resources and support for patients, families and caregivers
  • Connecting and maintaining relationships with other families

 

Disease-Specific Current Meetup Events

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Atypical Hemolytic Uremic Syndrome

LEMS Meetups

Lambert-Eaton Myasthenic Syndrome

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Narcolepsy